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Thursday, July 25, 2013

It's been a little while since I posted something. I've kind of had my head into brain tumour research. From a survivors perspective, that's "Google" research. What I'm finding is there really is not a whole lot of research for benign brain tumours. I'm finding heaps of information about cancerous ones which is fantastic and I've learned a lot. Some of the information can certainly be crossed referenced. However, what seems to be misunderstood is how benign brain tumours can be as serious as cancerous ones depending on their location. Can even mimic symptoms. I've joined this great website called It's Just Benign founded by Beth Rosenthal who had a benign brain tumour and still suffers the effects. She started the website because she too was having trouble finding information that wasn't cancer related. It's a great site with lots of information and a great place to connect with others who are living with lingering side effects.

I've been attending my physio which is working wonders but have to ask myself if there something I'm missing. Is there something I can be doing for my own health. Something I could be eating, a supplement I could be taking? Some sort of alternative medicine. I've seen a wonderful massage therapist named Mary Steckle for years. She works out of Active Approach in Halifax and specializes in Craniosacral Therapy, Visceral Manipulation and Myofasical Release. She has been working on my "head and body" for years but like anyone who has treated me in the past for my multiple medical complaints, never suspected a brain tumour. I've seen her once since my surgery and think it's time to go back.

Sadly, because of my balance issues I've hurt my knee. I've tweaked it catching myself off balance I think, however, physio is telling me to get an x-ray as it's been hurting quit badly for 4 weeks. I wonder if Mary could fix that?

My eyes have improved once again, great way to end a blog post, with good news. I'm now sporting the lowest prism possible, a number 1. Am I a number 1? No, I'm actually a 2, however, like always they give me the option to push my brain and eyes to work together. So of course, I choose to push it. It's a bit of an adjustment but I knew something had changed as my eye was hurting with the glasses on and with them off, I knew it was time to see the eye clinic once again. They retested everything which was great. My right eye is still not in line with the left but has improved. She did tell me that they are not able to fix all of my visual problems with prisms and once again time is the only way to tell if my brain and eyes will once again work together. Time, Time Time... Maybe my alternative medicine is to start cooking with Thyme? My perfect anniversary present from T Jay...Thyme in a can, open, water and once again wait for things to happen. At least this "time" I get "thyme"

Tuesday, July 16, 2013

July 8th 2012~You txt me out of the blue, explaining who you are, and asked if you could take me out to dinner? I thought who goes out to dinner? I txted back saying how about coffee/tea or ice cream? Just in case you were a crazy nut, I would only have to spend half an hour with you. Your return txt, and I quote..."you have to eat don't you? We can have coffee/tea and ice cream after dinner" I stare at my phone and wonder who is this guy, I respond back with a "sure why not" thinking he's a bit of a smart aleck.

July 9th to 15th 2012~small get to know you txting revels he is indeed a smart aleck. This is either going to be a long long dinner or a fun one.

July 16, 2012~you pick me up at my house and open the truck door for me...interesting I think to myself, a man with manners and chivalry. You surprise me with taking me out for Thai food, wow, he is so much more then Boston Pizza!!! Conversation is ridiculously easy and as I babble on, you look up at me from your meal and smile at just the right time, not only are you listening but you get what I'm saying. At that moment I thought ohhhh no, I was just looking for coffee. Crap!!! Late into the evening the date continues, tea and ice cream do follow, you walk me to my door and a polite kiss good night. I can't stop thinking about you, yet I tell myself that I'm very happy as a single person.

July 17, 2012~Would I like to get together again? YES, yes I would

August 16th 2012~We have spent every day together, I really like your company and you haven't given me one reason to suspect you are crazy. Who are you? The following week you meet my kids, it's like we've all know each other for years. By the end of August you are aware of my Trigeminal Neuralgia and see how powerful and debilitating it is to me. This frustrates you as a Paramedic, helpless with no answers. I see a Neurologist and am awaiting an MRI. I get a date, Oct 2, 2012, and we wait, you like everyone else reassuring me that it's nothing.

September 16, 2012~you are well aware and completely part of the planning process for my huge Christmas surprise for my kids. We have fun finding a place together that will be the perfect family vacation. We book the end of September.

October 2nd 2012~we are underway with the planning of our Halloween party, both thinking we are biggest fan ever!!! That day we travel to Antigonish, you poke light fun at my intense fear of going in the MRI tube. Having a hard time understanding my "there's no turning back now" in regards to answers, a feeling I just can't shake.

October 3rd 2012~The call. You come to my work place to find me in a heap of uncontrollable sobs, you spend the rest of the day with me as I perch myself on my thinking rock in Long Lake Park, not understand how I, at 40 could have a brain tumour. Who gets brain tumours? Why? What do I tell my kids? You are there to help me with all these questions and together we figure it out, one painful thought process at a time. It's more clear then ever, you are a gift from God, in the purest form, true Love.
A crazy whirlwind of appointments follow, pre-op, neurosurgery, family doctor and neurologist. You are there by my side to ask all the questions that I am too overwhelmed and stunned to ask.

November 9th 2012~We are up early, it's brain surgery day!!! I can't believe I'm having brain surgery, it just doesn't seem real. I'm scared, you reassure me, it's all going to be ok. My friend Heather is there with us. As I work at this same hospital my surgery is at, many of my co-workers parade through wishing me well. Tick Tick Tick goes the clock, we are delayed by an emergency. Very understandable. I finally fall asleep to be woken up by my neurosurgeon, another emergency. I've been cancelled. What? What do we do now? We go home and in shock I weep.

November 12th~I call in sick for work, I'm not functioning, I can't sleep, I can't eat, I can't stop crying. You are there with me, to help sooth every tear. Memories of childhood come flooding back, things I never even realized were there. Memories of being "let down by the system" when I was 25 and pregnant, finding out my 16 week old fetus had died but because it was December 23rd I had to wait until December 27th for a D&C to remove the baby. I am beyond angry and stunned suddenly at our medical system. Why does everything horrific happen to me at this time of year? I have cracked, but I don't know it yet. Still not functioning, you help with Christmas. This was supposed to be the best Christmas ever. You are amazing.

First week of December I go to see a councilor. I am raw with open wounds that I thought I had healed long ago. You stick by me, holding me, helping me, loving me and understanding me. It's going to be alright. I work through the feeling of abandonment and I come out the other side. I ask my doctor to return to work, I'm going to be ok.

First week of Jan~I'm back to work, feeling better mentally then I had felt in a long time. Your support has been more then anyone would ever expect. I so love you. I'm told that my surgery could be January 11th 2013. Mmmhmm we'll see when the day comes I think. I kind of prepare mentally but I'm not holding my breath. If it's not that day, I'm ok with it.

Jan 10th~we get the call, yup tomorrow is my day. You pretend to be ok, so do I

Jane 11th~We are up early, it's brain surgery day...again!!! Same room, same sweet lovely nurse. Guess what...a delay. Been here, done that, and we wait. I'm not scared this time and I'm truly at peace with whatever happens. Lets face it, it's brain surgery around my brain stem, we are not baking a cake from a box here!!! This is big time serious crap. We are told no bed for me, mmhmmm yup...I guess I'll be working Monday is what I think. 10:00 it's time, lets go we have a bed, it's show time. OH MY...I'm having brain surgery. We embrace and I know when you tell me everything is going to be ok, it is!!! I can feel your fear, we kiss and I'm off. Suddenly terrified, brain surgery, who has brain surgery!!! That's crazy.
Throughout the day you keep a journal of what the nurses said, who came to see how I was doing, and how you were feeling. You and Heather pass the long 10 hours somehow. I slept through it (I know bad joke) I awake to see you and Heather and I am sooo grateful that I woke up. I am so happy to see you, I know who you are, I can move my arms and legs, my head hurts.

Jan 11-16 I'm in ICU Step Down, you are there to feed me, walk me to the bathroom, even to bathe me. You are love in it's purest form. I know this at the time but can't express it. Everything is very confusing and I just don't feel like myself. I'm tired but you push me, I hate that. Nothing seems normal, you are there to help me through it.

Jan 17~you bring me home, I can barely stand, I can't see right and I still can't figure out how to get the food to my mouth. You are there by my side, never leaving, always helping, always loving, forever patient. I'm so glad to be home yet don't understand how in this state I could be.

Feb 16~Recovery is cruising along I can do this. WOW look at me go. I just can't see right and I keep falling over, well this is starting to suck!!!

March 16~Recovery continues, you get me a tablet for my birthday so I can make everything REALLY big on it. The Internet is now mine...muuhwaaahhhaha (evil laugh)

April 16~ We are experts at Doctor appointments. I have so many Doctors and you take me to every appointment. Asking all the right questions as I stumble my way through this.

May 16~I'm done, I don't want to play this game anymore. I'm tired of the stall, hurry up last leg of this recovery. I just want to get back to work. I miss my job, my co-workers, my friends. I miss my Independence. I become angry, this is NOT how I saw this happening. Find out my eye improved a little, Hooray!! Find out I have 25 radiation treatments in my future, Horrr...no..no there's no hooray, there is just an overwhelming feeling of this is not done yet. You are amazing, again the right questions at the right time to the right people. You do your best to joke through this new information to try and lighten the mood. I'm having none of it, I'm angry and it shows. You are amazingly patient with me, I don't know how you do it. There is not a day that passes that I don't thank God for you, you need to know that.

June 16~onward and upward, we trudge on, I'm getting some energy back, I over do it, you tell me this, as does my physio. I hate it when you are right. With grace you never tell me "I told you so". How are you so patient with me? You always say you are the luckiest man in the world. I say I'm the luckiest women in the world and know that God forbid, if the tables were ever turned I would do all the same for you. YOU are my soul mate. We truly know what the other needs or wants. I am blessed to have you in my life.

July 16th~One year from the day you took me out for Thai food. Never in a million years did I ever think I could love someone as much as I love you. T Jay, only you will understand my "mush puddle" love for you. You are LOVE.

Thursday, July 11, 2013

I started a blog post late last night called "Never Say Never" It was about all the things I never thought would be part of my life, prisms, balance, owning a car and no driving etc!!! I was feeling a bit ho hum about today being my 6 month post op day and here I am still recovering. Then I got a txt from my friend Jen this morning that said "Celebrate all your accomplishments!!! You've come a long way in 6 months." My first reaction was yup that sure is crazy...the 6 month part. Then I starting thinking I'm focusing way to much on the the post op number and not on what I have accomplished. I said a while back that on the 1 year mark (Jan 11th) I was going to celebrate it as a birthday, that must have been on one of my "up"days. Today I certainly wasn't feeling any "celebration" for my half year mark. Well, thanks to Jen I've been thinking about all that I have been through in the last 6 months and there certainly is a heap of bad but some truly amazing accomplishments that have come along the way. For example:

I can always find my mouth now when inserting a fork or spoon. Since I can't feel the right side of my face, there was always the potential for "fork/face injury"

Drinks only sometimes drool out the right side of my mouth. Yup it's like being at the dentist everyday for me but I've figured out that all liquids need to go instantly to the left of my mouth, helps to avoid the dribble.

I only tip over in public sometimes, I figured out that a cart is a great stabilizer.

My eyes have been improving, still rooting for them to make a full recovery.

I can climb up and down my stairs without them seeming like a mountain. Not to say that they don't tired me out but I no longer look up and think "are you kidding me"

Monday, July 8, 2013

Finally, some fresh air!!! It has been a couple of really hot days here in Halifax and it's not something we are used to around here. We live on the coast, so it's always damp, add hot sunny days with a Humidex and you get temperatures in the 40's. Yikes, it was sticky!!! When you are lacking energy, adding that kind of humidity, you get a girl who was excited to go to Kent Building Supplies simply for the air conditioning.

I swear they turned off my heat regulator switch in my brain. I picture the inside of my brain kind of like a breaker panel in your house, but I can't get at it to reset the one that's tripped. The right side of my head feels like it is expanding in the heat. Pushing against my skull causing sharp pains to zip across my head. Speaking of sharp pains, yup I've had to up the meds again. I held off as long as I could without adding another 100mg to my dose but on Thursday when I was shocked 8 times in a two hour period, it was time. It's not the end of the world if it keeps them at bay, I just can't help but wonder (and of course picture) what is currently going on in my head to cause the Trigeminal Neuralgia to be back. Is it regrowth, is it permanent damage? I wish they put a little piece of plexi glass in my head so you could peek in every now and then and say "yup, tumours' looking good, same place, same size, it's all good." I guess that's what an MRI is in a way, but I'm impatient and hate waiting for someone else to tell me what's going on. It's that whole "I'm not in control" thing again. Since I can't do anything about that, other then accept it, lets move on.

I think my eye might be getting better. I have that pulling feeling happening from within my brain to my eye. Kind of hard to put into words, but that's how it feels. I'm hoping to see the eye clinic soon so they can retest. I'm 3 days away from my 6 months out mark. I can't help but hear the words of the eye clinic " usually where you are at 6 months is where you are going to be". Now I certainly understand that 6 months is a rough number and healing is taking place every day. You do however, have to understand this girl thought she would be back to work in a month. So brain you have until July 12 to get it right!!! ;)

All jokes aside I know that things won't ever be the same, there's a tumour in there, doing what it wants when it wants. In the last couple of weeks I either smell or taste metal. I can't really decide which it is, I think it's smell, which has led me to cleaning things that I thought were at it's cause. Until I had the smell/taste in a parking lot and knew it was not something in our house. Maybe it's me? Since I shower daily I don't think I smell like a rusty old nail, but as I'm all too aware this last year, anything is possible.

Wednesday, July 3, 2013

Canada Day I had some fun writing about the things that make our Country great. One of my earliest memories of being Canadian is of the Red Rose Commercial from 1977 "only in Canada you say? Pity" I was 5 years old when this commercial played on our black and white TV. I drink Red Rose and only Red Rose tea to this day and still have some of those little tiny figurines tucked away from when I was a child. I played happily with them, chest height on the window ledge. I loved when a new box was opened to see which one was inside. Well guess what? THEY ARE BACK. How exciting is that!!!! I don't think I will be playing with them on the window ledge this time, I will however, take more care not to accidentally snap the head off the little boy. He was part of the Nursery Rhyme collection, he hung out with the goose and the cat. :)

Tuesday, July 2, 2013

Well, it's raining in Halifax again today. This must be day 30 out of the last 30. It's really unreal how much rain we've seen here this Spring and now into Summer. I've said for years "It's a great day for ducks" as a way to turn around the "blues" feeling we all get on damp dreary days. However, I'm sure I overheard the ducks the other day complaining about the weather. As you can see ducks in Nova Scotia have their own Sou'wester hats!!!

All jokes aside, I'm thankful we have the great Atlantic Ocean for all this rain to run into so we are not in the same horrific situation of Southern Alberta. My thoughts, well wishes and prayers extend to those families.

One of the great things about rain is it tends to be cooler and that doesn't hurt my head. Hot muggy rainy days seems to create a throbbing pressure in there. You would think having my very own hole in my head would relieve some of that, but I can tell you it doesn't work that way. Days like today are days I can get some "extra" things done around the house. However, like anyone on dreary days, a nap sounds better then doing laundry.

Monday, July 1, 2013

Thank you Canada for 4 glorious seasons: Spring (my favorite) Summer, Fall and Winter (Ick, but some people actually like snow).
Thank you Canada for being a kind Country, and better yet, being known around the World for it.
Thank you Canada for our clean drinking water.
Thank you Canada for our education system.
Thank you Canada for having both men and women in the Military.
Thank you Canada for Women and Men being equal by Law.
Thank you Canada for two official Languages, English and French.
Thank you Canada for our Multicultural Society.
Thank you Canada for recognizing same sex marriage.
Thank you Canada for one of the Worlds highest standards of living.
Thank you Canada for Hockey, Basketball, insulin, the electric cooking range, IMAX film system, electron microscope, kerosene, electric organ, duct tape, and the all important telephone.
Thank you Canada for Smarties, Red Rose Tea, Pablum, Poutine, Beaver Tails, Timbits, and date squares.
Thank you Canada for unique words like Eh, Hoser, screech/swish, loonie, twoonie, touque, Canadian Tire Money, labour, colour, honour, tumour...all spelled with a "U".
Thank you Canada for The Friendly Giant, Casey and Finnegan, Beachcombers, Hockey Night in Canada, Sharon Lois & Bram, Much Music, and of course Bob and Doug McKenzie.
Thank you Canada for the highest tides in the World (Nova Scotia &New Brunswick).
Thank you Canada for CBC.
Thank you Canada for free Health Care (I am truly thankful for this one).
Thank you Canada for my freedom of religion, expression, beliefs and thoughts. Which allows me to express my feelings in this blog on any given day.